CFSAC Around the Corner

The next meeting of the CFS Advisory Committee will be held Thursday, January 12th, and Friday, January 13th. This is an in-person meeting, and will also be webcast. Note that the Thursday meeting runs from 12 pm to 5pm, while the Friday meeting is a full day.

This will be the first in-person CFSAC meeting since August 2015 (!), and the first meeting organized by the new Designated Federal Officer, Commander Gustavo Seinos. The meeting will NOT be held at the Health & Human Services building. Instead, the meeting will be located at the The Henry J. Kaiser Family Foundation’s Barbara Jordan Conference Center – 1330 G ST, NW – Washington, DC 20005. According to the Federal Register Notice for the meeting, you will still have to register in order to attend in person (registration instructions have not been posted yet). If you are planning to attend in person, remember that the inauguration is only one week later (January 20th), so DC will be more crowded than usual.

Thirty minutes will be allocated for public comment on each day of the meeting. The Federal Register notice has details on providing oral and written comments, but the most important thing to note is that there are deadlines:

• To sign up for oral comment (in person or by phone), you must request a slot by sending an email to cfsac@hhs.gov by January 5, 2017. The email should contain the speaker’s name and the telephone number at which the speaker can be reached. Oral comment is limited to three minutes, which means no more than twenty people will have the opportunity to speak.
• To have written comment provided to CFSAC members, you must submit it prior to the meeting. You are limited to five single-space pages. See the Federal Register Notice for more details.

There is no agenda for the meeting yet, but there should be updates from the working groups formed after the May 2016 webinar meeting. The Stakeholder Engagement Working Group (of which I am a member) will present an interim report on its discussions of how to engage community stakeholders in research efforts. A second working group was formed to examine the feasibility of HHS and the Department of Education to collaborate in providing resources for parents of young people with ME/CFS and school nurses, but I have no information on the status of that group. Dr. Jose Montoya agreed to lead a working group to develop a detailed supporting case for a substantial increase in research investment, but I have no information about the status of that group either.

If you need fodder for your public comment, you could take a look at my summary of the May 2016 webinar meeting. A very important issue is the CDC’s refusal to remove PACE-based treatment recommendations from its materials, despite the reduction of PACE to a steaming hot mess after reanalysis of the data using the original protocol. You could also look at my summary of NIH’s research funding in fiscal year 2016 and/or the P2P Federal Partners Meeting report. Building on Terri Wilder’s excellent public comment from the May 2016 meeting, you could talk about #MillionsMissing. The NIH Clinical Care Study has recently revised its protocol and appears to be recruiting, and there is also the Shorter Fiasco to discuss.

Finally, there are some changes to CFSAC that you should review. Due to term limits, CFSAC is down to only seven out of thirteen voting members. I do not know if new members will be appointed prior to this meeting. New ex officios from the Department of Defense and the Veterans Administration have also not yet been named. Finally, the new charter added a new purpose on which CFSAC can make recommendations: “strategies to insure that input from ME/CFS patients and caregivers is incorporated into HHS policy and research.” You can read my summary of all the charter changes in this post.

Despite HHS’s poor record on adopting CFSAC recommendations, and despite how frustrating the meetings themselves can be, CFSAC is still our major public venue to learn about HHS activities and to provide input to HHS on the record. As I’ve said before: if someone offers us a microphone, we have an obligation to speak. No one will speak for us if we refuse to speak for ourselves.

My thanks to Denise Lopez-Majano, whose assistance made it possible for me to write this post.